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Welcome to the third installment of our blog post series
about the Norton & Elaine Sarnoff Center for Jewish Genetics Community Needs Assessment! Last
time, I shared some factors that influence understanding of Jewish
genetic health.

This time, I’ll discuss strategies to support people in
learning about Jewish genetic health. The final big question the needs
assessment addressed was: Now that we’ve measured what people know about Jewish
genetics, and how that differs between groups, how can we move the needle?

Needs assessment participants advocated for two main avenues
of sharing information about Jewish genetic health: professional education and community
education. Some suggested that they would be most receptive to information
about recessive disorders and hereditary cancers if it came from their
healthcare providers (including therapists) or clergy.

That said, not everyone has a relationship with a rabbi, and
not every healthcare provider has the time or bandwidth to address Jewish
genetic health in depth with patients. Community education can supplement and
complement professional education. Both
are necessary to ensure that people feel empowered to manage individual and
family health.The
Norton & Elaine Sarnoff Center for Jewish Genetics already provides
opportunities for professional education and community education, and these
findings are helping us to grow and refine the educational supports we offer.

Participants recommended a variety of approaches to engaged
constituents, themselves, and their peers:

Participants also spoke of the power of peer education and learning
from their families about health. We can most effectively educate at-risk
families of Jewish ancestry by reaching them through a variety of avenues.
Different formats and topics interest people across the lifespan, so developing
a menu of options for education is critical.

Tune in for our last post to learn about what we’re taking
away from the needs assessment process. I’ll share our recommendations and next
steps based on these findings.

Welcome to the second blog post in our series about findings
of the Norton & Elaine Sarnoff Center for Jewish Genetics community needs
assessment. Last week, I shared an overview of what we learned about community
knowledge around Jewish genetic health.

Today, I’ll dive deeper into differences in knowledge
levels. Who tends to know the most about Jewish genetic health, and who tends
to know the least? What people know about Jewish genetic health depends, in
large part, on their circumstances.

Several factors shape understanding of and exposure to
Jewish genetic health topics. These include:

Personal & family health experiences

Age

Life events: marriage, childbearing

Gender

Jewish ‘Resume’: Involvement in Jewish communal
spaces

Education and socioeconomic status

Here’s a taste of what
participants shared in interviews, focus groups, and surveys:

Personal experiences: “I’m on my toes about
it”Having a personal experience with genetic screening around
family planning or cancer diagnosis, or knowing a family member or friend who
did, often led participants to feel more informed about Jewish genetic health.

One
college student said, “My grandmother died of pancreatic cancer. I’m on my toes
about it. Knowing how common cancer is, too, makes me a little less afraid but
it’s important to be on your toes if anyone [in your family] has died from
cancer.”

“Unless
it’s touched them personally or their families, they probably don’t know about
it”Participants who
didn’t know someone who had been affected by hereditary cancer, recessive
genetic disorders, or other genetics-related health issues said, for the most
part, that these topics did not feel relevant to them. As one rabbi summed it up, these issues were
“not on their radar.”

Age and life events: “It
doesn’t come up until it does”Younger people and
single people are less likely to know about recessive genetic disorders and
hereditary cancers. Only 44% of people under 25 reported knowing someone who
has gone through carrier screening—compared to 68% of people 25-39 and 87% of
people aged 40-54.1
People under age 25 understand less about hereditary cancers than any other age
group.2.

Two
experiences pivotal to learning about recessive disorders are marriage and
childbearing. Many people first heard about carrier screening as they were
planning to start a family. Others first heard about it in prenatal care.

As
people age, they, and their peers and family members, are more likely to be
directly affected by cancer. People aged 40-54 and above tend to know more
about this topic than younger individuals.3 One rabbi said, “I feel like I know so many women right now who are my age who
have breast cancer, so it’s definitely on forty-something mothers’ minds.

Gender: “Nobody ever talks to a dude about
this”Even though recessive
genetic disorders and hereditary cancers affect people of all genders, women
were more comfortable discussing both topics. Participants generally felt that women
are more likely to pursue medical information.

Women
are more likely to report knowing someone who has had carrier screening than
men: 72% of women surveyed did, compared to just 54% of men—almost a 20 point
difference.4

Women
also knew more about hereditary cancers than men: they understood, on average,
80% of concepts related to hereditary cancers, where men understood 72%.5

The
impact of BRCA1 and BRCA2 mutations on women is fairly
visible in some communities, but the impact on men is discussed less
frequently.

Jewish ‘resume’: “If you grow
up in the Jewish system, you probably get it somewhere, but not everybody grew
up in that system”Many Jewish
professionals and healthcare professionals pointed to the barriers of reaching
people who don’t “grow up in the Jewish system” with information about Jewish
genetics. One obstetrician-gynecologist said, “I
don’t have to talk to the Orthodox Jews about this, they’ve done all their
screening. It’s more with the casual Jew that this comes up in practice.”

Education
and socioeconomic status (SES)Like overall health
literacy, Jewish genetic health literacy is related to educational attainment.
Many of the participants who were most knowledgeable about Jewish genetic
health had graduate degrees. Many people cited college as where they first
learned about Jewish genetic health.6

We
did not directly collect data on income levels, but we suspect that people with
higher household income are more likely to access carrier screening. The
majority of participants in the Sarnoff Center’s carrier screening program who
report their income level have a household income of more than $100,000 a year.
Low-income people face various barriers to accessing information about Jewish
genetics, from lack of internet access to not having medical insurance. We
still have much to learn about how best to reach low-income individuals.

The main takeawaySome individuals are more
likely to be aware of Jewish genetic health concerns than others. The Norton
& Elaine Sarnoff Center for Jewish Genetics will use these findings to
improve educational resources, tailoring them to support different needs.

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6. There may have been some
confounding by age because older people tend to have achieved higher levels of
education, but this effect held when we eliminated participants below age 25
from the analysis.

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of
genetic disorders
. Talk to your relatives for warning signs and
assess your risk
for hereditary cancers.

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you?
Click here to learn more
.